Perception of parents of children and young people who use wheelchairs about participation and the environment: a cross-sectional study
DOI:
https://doi.org/10.17267/2238-2704rpf.2025.e6017Keywords:
Wheelchairs, Adolescent, Children with Disability, Social Participation, Social EnvironmentAbstract
INTRODUCTION: The wheelchair is often indicated to improve the participation of children/young people with disabilities. However, the literature is scarce regarding this effect, and the environment can be a barrier. OBJECTIVE: To know out the perception of parents of children and young people who use wheelchairs about participation and the environment. METHODS: Cross-sectional study with parents/guardians of children/young people who use wheelchairs, aged between 5 and 17, who were treated at two rehabilitation centers in the capital of a Brazilian state. A sociodemographic questionnaire and the PEM-CY were administered. RESULTS: The survey obtained 43 participants, showing a perception of greater participation at home, mainly in being with other people (6.9 ± 0.2) and watching TV (6.6 ± 1.5). In the community, attendance was low for all activities and 79.1% wished that participation in organized physical activities were greater. At school, they participated more in classroom activities (5.7 ± 2.5). Home was perceived as an environment with the most facilitators (72.5%), the fewest barriers (17.0%) and the highest scores for kindness, resources and general support from the environment (88.1%; 80.3% and 84.9% respectively). CONCLUSIONS: According to parents' perceptions, participation is higher at home, as the environment is more supportive. At school, they are more restricted to classroom activities and being with peers, with fewer facilitators. There is little participation in the community, more often in passive activities, as there are more barriers and fewer resources available.
Downloads
References
1. World Health Organization (WHO). International Classification of Functioning, Disability and Health. Lisbon: World Health Organization; 2004
2. Coster W, Law M, Bedell G, Khetani M, Cousin M, Teplicky R. Development of the Participation and Environment Measure for Children and Youth: Conceptual Basis. Disabil Rehabil [Internet]. 2012;34(3):238-46. https://doi.org/10.3109/09638288.2011.603017
3. Field DA, Miller WC, Ryan SE, Jaurus T, Abundo A. Measuring Participation for Children and Youth With Power Mobility Needs: A Systematic Review of Potential Health Measurement Tools. Arch Phys Med Rehabil [Internet]. 2016;97(3):462-477.e40. https://doi.org/10.1016/j.apmr.2015.08.428
4. Instituto Brasileiro de Geografia e Estatística (IBGE). Pesquisa Nacional por Amostra de Domicílios Contínua: Pessoas com deficiência 2022 [Internet]. Rio de Janeiro: IBGE; 2023. Available from: https://agenciadenoticias.ibge.gov.br/media/com_mediaibge/arquivos/0a9afaed04d79830f73a16136dba23b9.pdf
5. Sá SMP, Rabinovich EP. Understanding the family of the physically disabled child. Rev Bras Crescimento e Desenvolv Hum [Internet]. 2006;16(1):68-84. Available from: https://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S0104-12822006000100008
6. Dantas KO, Neves RF, Ribeiro KSQS, Brito GEG, Batista MC. Repercussions on the family from the birth and care of children with multiple disabilities: a qualitative meta-synthesis. Cad Saúde Pública [Internet]. 2019;35(6):e00157918. https://doi.org/10.1590/0102-311X00157918
7. Galvão ERVP. Adaptação Transcultural e Validação para o Uso no Brasil da Medida da Participação e do Ambiente – Crianças e Jovens (PEM-CY). [Dissertação] [Internet]. Natal: Universidade Federal do Rio Grande do Norte; 2019. 75 f. Available from: https://repositorio.ufrn.br/jspui/handle/123456789/27528
8. Coster W, Bedell G, Law M, Kethani MA, Teplicky R, Liljenquist K, et al. Psychometric Evaluation of the Participation and Environment Measure for Children and Youth. Dev Med Child Neurol [Internet]. 2011;53(11):1030-1037. https://doi.org/10.1111/j.1469-8749.2011.04094.x
9. Bastable K, Dada S, Uys CJ. The Effect of a Non-Powered, Self-Initiated Mobility Program on the Engagement of Young Children with Severe Mobility Limitations in the South African Context. Phys Occup Ther Pediatr [Internet]. 2016;36(3):272-91. https://doi.org/10.3109/01942638.2015.1126879
10. Voorman JM, Dallmeijer AJ, Schuengel C, Knol DL, Lankhorst GJ, Becher JG. Activities and Participation of 9- to 13-Year-Old Children with Cerebral Palsy. Clin Rehabil [Internet]. 2006;20(11):937-48. https://doi.org/10.1177/0269215506069673
11. Ganz F, Hammam N, Pritchard L. Sedentary Behavior and Children with Physical Disabilities: A Scoping Review. Disabil Rehabil [Internet]. 2021;43(20): 2963-2975. https://doi.org/10.1080/09638288.2020.172372
12. Maher CA, Williams MT, Olds T, Lane AE. Physical and Sedentary Activity in Adolescents with Cerebral Palsy. Dev Med Child Neurol [Internet]. 2007;49(6):450-7. https://doi.org/10.1111/j.1469-8749.2007.00450.x
13. Stiglic N, Viner RM. Effects of Screentime on the Health and Well-being of Children and Adolescents: a Systematic Review of Reviews. BMJ Open [Internet]. 2019;9(1):e023191. https://doi.org/10.1136/bmjopen-2018-023191
14. Runacres A, Mackintosh KA, Knight RL, Sheeran L, Thatcher R, Shelley J, et al. Impact of the COVID-19 Pandemic on Sedentary Time and Behaviour in Children and Adults: A Systematic Review and Meta-Analysis. Int J Environ Res Public Health [Internet]. 2021;18(21):11286. https://doi.org/10.3390/ijerph182111286
15. Blum RW, Resnick MD, Nelson R, St Germanie A. Family and Peer Issues Among Adolescents with Spina Bifida and Cerebral Palsy. Pediatrics [Internet]. 1991;88(2):280–5. Cited: PMID: 1861926
16. Schmidt AK, van Gorp M, van Wely L, Ketelaar M, Hilberink SR, Roebroeck ME; Perrin-Decade Pip Study Groups. Autonomy in Participation in Cerebral Palsy from Childhood to Adulthood. Dev Med Child Neurol [Internet]. 2020;62(3):363-371. https://doi.org/10.1111/dmcn.14366
17. Dunn L, Gardner J. Household Task Participation of Children with and without Physical Disability. Am J Occup Ther [Internet]. 2013;67(5):e100-5. https://doi.org/10.5014/ajot.2013.008102
18. Li R, Sit CHP, Yu JJ, Duan JZJ, Fan TCM, McKenzie TL, et al. Correlates of Physical Activity in Children and Adolescents with Physical Disabilities: A Systematic Review. Prev Med [Internet]. 2016;89:184-193. https://doi.org/10.1016/j.ypmed.2016.05.029
19. Rimmer JH, Schiller W, Chen MD. Effects of Disability-Associated Low Energy Expenditure Deconditioning Syndrome. Exerc Sport Sci Rev [Internet]. 2012;40(1):22-9. https://doi.org/10.1097/JES.0b013e31823b8b82
20. Palisano RJ, Kang LJ, Chiarello LA, Orlin M, Oeffinger D, Maggs J. Social and Community Participation of Children and Youth with Cerebral Palsy is Associated with Age and Gross Motor Function Classification. Phys Ther [Internet]. 2009;89(12):1304-14. https://doi.org/10.2522/ptj.20090162
21. Tefft D, Guerette P, Furumasu J. The Impact of Early Powered Mobility on Parental Stress, Negative Emotions, and Family Social Interactions. Phys Occup Ther Pediatr [Internet]. 2011;31(1):4–15. https://doi.org/10.3109/01942638.2010.529005
22. Volpini M, Brandão MB, Pereira LAR, Álvares R, Mancini MC, Assis MG. Wheeled mobility: the perception of parents of children with cerebral palsy. Cad Ter Ocup [Internet]. 2013;21(3):471-478. http://doi.org/10.4322/cto.2013.049
23. Soares LS, Galvão ÉRVP, Barbosa IR, Ferreira HNC, Cruz RS, Fechine CPNS, et al. Prevalence of Environmental Barriers in Children and Adolescents with Physical Disabilities: A Cross-Sectional Study.mtprehabjournal [Internet]. 2020;18:1-8. https://doi.org/10.17784/mtprehabjournal.2020.18.789
24. Badia M, Orgaz B, Gómez-Vela M, Longo E. Environmental Needs and Facilitators Available for Children and Adolescents with Cerebral Palsy: Adaptation and Validation of the European Child Environment Questionnaire (ECEQ) Spanish Version. Disabil Rehabil [Internet]. 2014;36(18):1536-48. https://doi.org/10.3109/09638288.2013.847124
25. SChien CW, Lin CY. Community Participation of School-Age Children: Who is at Risk of Restricted Participation? Phys Occup Ther Pediatr [Internet]. 2021;41(5):447-463. https://doi.org/10.1080/01942638.2021.1900489
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Regina Moreira da Silva, Eliane Maia Galvão, Manuela Fernandes de Almeida Mello

This work is licensed under a Creative Commons Attribution 4.0 International License.
This work is licensed under a Creative Commons Attribution 4.0 International License.
